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Monday, November 11, 2013

Emotional Ups and Downs

This week John is trying to get back to work at least in the mornings so today my Mom took me down to be with Grace and Katie came along. She really wanted to hold her sister. We found Gracie in a swing when we arrived. The nurse said she had been really fussy after her feeding and holding her wasn't helping and the swing was the only thing that soothed her.

Changes:

Grace's nasal cannula is no longer the humidified high-flow. She still gets 2.0 of oxygen.

She was able to suck from a bottle and whatever milk she doesn't finish they tube feed. She gets 33 cc. which is a little over an ounce and they feed her every 3 hours.

I talked to Dr. Konduri today for an update and he said obviously there is a huge change between today and a week ago and he is so happy with her progress. They finally got the results back from the EEG that Grace had last week Monday.

An EEG is a test of electrical activity of the brain. By looking at the EEG they can get some idea of how the brain is working. The EEG is most useful at telling if there is a tendency to have fits or seizures. EEG is short for electroencephalogram.

The results showed no signs of seizures which is good. It did show that her brain is a little behind what it should have been for 36 weeks gestational age (what she was last Monday). He is not too concerned being that she was a very sick baby and that could have a lot to do with the results. But they will schedule another EEG in the next week or two. If she has gone home already it will be as an outpatient. She will also have an MRI done before she leaves.

The main goals for Grace are to decrease her oxygen and get her eating normally without the tube and taking in more.

I was able to attempt breastfeeding today which I was surprised at. I had been told that she would take to the bottle first to get her used to eating. Apparently since she was a late-term preemie but more that she wasn't eating for 8 days it may take her longer to catch onto this whole process. Thankfully she has proven she knows how to suck with the pacifier. I was able to get her to latch on twice and each time she sucked for about 2 minutes but then promptly fell asleep.

The hard thing about being in the hospital as the nurse explained is that they have scheduled feedings. It isn't as at home where I follow her cues. Here if she doesn't catch on I don't keep working on it but give her a break. I was able to give her some time but then we tried the bottle and she wasn't really thrilled about that either. Basically, she wasn't interested and was perfectly content to sit an look around. But, because of the "schedule" I ended up having to tube feed her and let gravity pull the milk into her belly. We aren't going anywhere at that rate.

But, I am so thankful that she did latch on as that is one step in the right direction.

When I got home I realized how much life moves on no matter if I am at this stand-still feeling stuck in time. John took the kids to 4H and here I am "resting". I probably don't rest as much as I should, I know. When we left the hospital I so much wanted to take my baby and leave. It is hard driving down and back each day. It is hard being with my baby for only 4 - 6 hours each day and having to hand her back to the nurse to cuddle and console. I know that right now she needs their care and I need to be patient and trust the Lord's timing on this. But please pray for me. I am really struggling tonight.

We're sending strength your way, looking at all these lovely images of your newest baby! I know it is horrible to leave your babe behind, but this too shall pass and she will be all yours soon! She's beautiful; she looks alert and bright. You picked a perfect name and I think she will live up to that. I noticed you worried it might be her crying when you are not there, but that just means her lungs are improving, so rejoice! God bless you all for your faith and your optimism. We think of you daily and hold you in prayer. Carbaughs

I'm so happy for you all that you have been able to hold and comfort Grace. That is wonderful that she was able to latch on. Every little milestone is so big in this kind of situation. Excited for you, but sad, too that you have to leave her there for now. That must be terribly hard.